Thursday, August 23, 2012

Okay, so - not the best picture but you get the idea that Katie is pushing a cart.

I took this from a video, and the point of this picture is that we have had this toy shopping cart formanyyears and she is just now able to use it. She can load up the food, pans, and baby, and she's off! Well, not without a little help from Mommy.

Until now, Katie was not be able to balance or have the strength to hold herself up and push this cart at the same time. All of these little accomplishments are so big for her, and us!

Now if only I could give her a list in the grocery store and send her on her way...

Tuesday, August 14, 2012

Katie started school and is loving it! She is quite the social one and I am sure she is so glad to see her friends at school again. Her teacher can't believe how well she is walking and how much she has grown over the summer (same terrific teacher as last year).

Here, she is sporting her hot pink Michael Jordans - good ankle support. Katie is walking all over the place and can literally go from one end of the house to another. Her balance is not perfect, but much better than the beginning of the summer. We follow her around like over-protective parents and make sure there will not be anymore broken teeth.

After six weeks of the Conductive Education Summer Program (3 hours a day), she is showing a lot of progress. The walking is sure coming along, now if we can just get her talking. Oh, that would be awesome!

Wowie! Katie can do this puzzle and she can even get the triangle in! I remember the day (not very long ago) when I wondered if she'd ever have the coordination and motor skills to to do a puzzle. Now she's a pro at this one. Next in line - fruit puzzle.

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Katie's Story!

Read our story on the ViaCord website - click on the picture above

welcome to my blog!

Our daughter Katie, underwent a cord blood transfusion at Duke Medical Center in early January 2010. It was her own (umbilical) cord blood which we had saved at birth through a company called ViaCord. Not really thinking we would ever have a need for it, we were absolutely THRILLED at the thought that her own cord blood might be able to change her life, and help her to progress faster.

We are very hopeful that this procedure will help Katie to progress faster in overcoming her many physical delays. Mentally she seems to be fine, able to understand, and tries to communicate, but her physical delays hold her back.

What is expected is that the stem cells in the cord blood will repair or replace any damaged cells, or form new connections anywhere in her body that needs it. We were told not to expect much for at least 6 months - that most parents report a jumpstart in therapies at about that time. However, there are those families I have seen on youtube or the news who have incredible results - some even right away, and I can only be hopeful that we will have a similar experience. After all, I am her mom!

I believe that with the help of Katie's therapists, caregivers, and family, that I will be able to objectively sort out any milestones or changes that may be due to the stem cell transfusion, and that is what this blog is all about!

04/20/16 Katie has been diagnosed with a very rare gene mutation on the gene GRIK2. TGen is who found this gene mutation and put us in touch with a scientist at Northwestern University who is doing further research on Katie, specifically. So awesome!

about Katie

Katie was diagnosed with hypotonia at age 1, which is basically weak muscles, not really a true "diagnosis". We have no idea why she has this, but it delays her in many areas such as crawling, sitting, walking, talking, and fine motor skills. Katie is now 10 years old and she started walking about 4 years ago but still unsteady. Her coordination and balance are something we are constantly working on.
She did wear glasses from ages 2-4 and then her vision improved and she doesn't need them anymore, which is so great! Getting glasses on her was not easy - had to come from behind and put them over her head that way. It's nice not to have to worry about getting the glasses on her any more!
Katie can totally understand what you say, nods her head for "yes", has a few signs (for "more" and "me") but still is not able to talk much at all. Maybe a few words.
Katie is a work in progress!